The importance of high quality data on the service use and needs of children and young people with an intellectual disability (ID) is vital for health service planning. The National Intellectual Disability Database (NIDD) was set up in 1995 for this purpose. A lot has changed since the first Irish Census of Mental Handicap (as it was referred to then) in 1974, not least a 46% increase in the number of individuals recorded as having a moderate, severe or profound intellectual disability (Doyle, Hourigan & Fanagan, 2017; Mulcahy, 1976). People with intellectual disabilities are living longer and enjoying full lives but the need for services and supports continues. Appropriate planning for transitional periods in life, such as going to or leaving school, need to be carefully considered as well as the provision of suitable supports for family caregivers who play a pivotal role in the lives and support of children and young people with an ID. This research summary describes the population profile, current service use and future service requirements of those registered on the NIDD in 2016 and who are aged less than eighteen years.
Profile of population
The 2016 NIDD report is based on 28,275 people of which 8,918 (31.5%) were aged less than eighteen years. There were significantly more males under eighteen years registered (5,977, 67.0%) than females (2,941 33.0%) and those in the ten to fourteen years age group represented the largest age group (3,090, 34.6%), see Table 1 below.
Table 2 shows the level of ID of those aged less than eighteen years. As one would expect, a high proportion (2,381, 26.7%) do not have a verified level of ID most likely due to their young age and that diagnosis has not yet been assigned.
Current service use
Almost all children and young people lived at home (8,837, 99.1%). The remainder lived in group homes or other residential services (79, 0.9%). Of the 8,888 people in receipt of day
services, 4,147 (46.7%) were in special schools, 2,179 (24.5%) in mainstream schools with the remainder receiving other day care services. Multidisciplinary supports were provided to
7,955 (89.2%) of the under eighteen population on the NIDD with speech and language therapy, occupational therapy and ID related medical services reported most frequently.
The 2016 NIDD report identified 534 new services or supports that would be required in the period 2017-2021. These include 43 residential services (8.1% of the new services
required), eight (1.5%) day services and 483 (90.4%) residential support or respite services. Of the 8,892 children and young people in receipt of services, 3,071 (34.5%) services require change, mainly in day services (2,691, 87.6%) as children transition within the education system.
The NIDD shows that children and young people with an intellectual disability are availing of a number of disability services. The 2016 findings highlight that additional new and enhanced
services are required, with an overwhelming need for respite and residential support services. Day services that support the transition from child to adult services and between educational settings are also in demand. The 2016 NIDD annual report and the associated complete set of tables are available on the HRB website: http://www.hrb.ie/publications/disability. The data are important in planning for these services for the future.